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GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

cyrusromeo

Always looking for improvement
Messages
29
Location
St. Paul MN
Jumping in after a while... Wondering if anyone else had an immediate reaction to gcmaf, good or bad? I've been taking .5 for a couple of months, and have been doing better than I have in a year and half, since brutal relapse.. Doc retested blood, suggested I go to .7. I'm wary, talked to a nurse that is taking it herself and we decided on .6 I did this on Friday and have been sicker than hell since. Lots of neurological stuff, weak, dizzy, and I can't believe it's such an instant and strong reaction to a tiny increase!?! Anyone experience something like this? I'm taking LDN, have been for some time... The thought that I'm going so far backwards, so fast, is absolutely terrifying. I live in MN, have a dog and BF travels much of the week.....
Christa
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Jumping in after a while... Wondering if anyone else had an immediate reaction to gcmaf, good or bad? I've been taking .5 for a couple of months, and have been doing better than I have in a year and half, since brutal relapse.. Doc retested blood, suggested I go to .7. I'm wary, talked to a nurse that is taking it herself and we decided on .6 I did this on Friday and have been sicker than hell since. Lots of neurological stuff, weak, dizzy, and I can't believe it's such an instant and strong reaction to a tiny increase!?! Anyone experience something like this? I'm taking LDN, have been for some time... The thought that I'm going so far backwards, so fast, is absolutely terrifying. I live in MN, have a dog and BF travels much of the week.....
Christa

Christa,

How many nanograms is .5 or .7? That would tell you how much you are increasing your dose. Different labs make different dilutions so .1 ml extra would be a large increase from one lab but not from another.

But that said, I take a GcMAF from a lab using a more dilute form (1 ml = 100 ngs), yet if I were to increase my dose by .1 ml or 10 ngs I would certainly feel it! From other labs this would be an increase of about 40 ngs--and that is a large increase.

So, yes, it is possible that increasing your dose in this way could cause immediate reactions. Just try to figure out how many ngs you took and maybe skip the next injection or wait till all the reactions have normalized.

Best,
Sushi
 

cyrusromeo

Always looking for improvement
Messages
29
Location
St. Paul MN
It's from Dr Enlander and I believe he uses the same source in Belgium. It comes in pre drawn syringes so I can reduce the dose and either throw away or potentially refreeze that little bit. I don't know how many nanograms but I'm glad I didn't go to .7!!
 

Daffodil

Senior Member
Messages
5,875
i think the reason the gcmaf works for some people, is that their main problem is chronic infections, whereas my main problem is that EBV induced an auto-immune process...thats why it seemed like it was helping at first - maybe it was fighting the infections due to my compromised immune system - but now, it is not helping.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
It's from Dr Enlander and I believe he uses the same source in Belgium. It comes in pre drawn syringes so I can reduce the dose and either throw away or potentially refreeze that little bit. I don't know how many nanograms but I'm glad I didn't go to .7!!

Then you took 60 ngs--that is quite a big dose. I can't manage more than 25 ngs. A few seem to be able to handle 50 ngs or more, but many can't.

You can also divide the GcMAF by taking the plunger out of a new insulin syringe (being careful not to contaminate it by setting it down) and squirt the extra GcMAF into the new syringe--then freeze it. I have done this sometimes if I have already divided my vial into syringes and later decide I need to lower my dose.

Best wishes,
Sushi
 

mellster

Marco
Messages
805
Location
San Francisco
i think the reason the gcmaf works for some people, is that their main problem is chronic infections, whereas my main problem is that EBV induced an auto-immune process...thats why it seemed like it was helping at first - maybe it was fighting the infections due to my compromised immune system - but now, it is not helping.

Just curious, what specific symptoms would you cite as pointing towards and auto-immune process started by EBV? I mean, what distinguishes auto-immune symptoms from symptoms due to infection?
 

Shoesies

Senior Member
Hi all! Back from my visit to Bradstreet. Had my first GcMAF treatment. I asked how many nanograms were in the shot and the nurse could not tell me. She said she only knew to measure by ml. I had a 1ml shot today and I have four more in this round of tx. Started at 1ml, next week 3ml, the following, 4ml and lastly 5ml. Sushi I will try and get with Dr. Bradstreet when we skype about test results to find out what nongram dosage he is giving. He does indicate in his paperwork that we are free to buy the GcMAF and inject ourselves, he would just prefer to follow is and give dosage assistance. Still unclear what that means in terms of dilution and dosage. I am beat from the trip. Bed for me. See ya'll tom maybe. Thanks for the help and good wishes. You do not know how helpful that has been.
 

Xandoff

Michael
Messages
302
Location
Northern Vermont
My reactivated EBV titers have gone down--either from GcMAF or the combo of GcMAF and Nexavir.

Sushi
Hi Sushi,

I just took my 33rd GcMAF injection from GcMAF.eu and it does seem to be working. Again for anybody taking GcMAF from GcMAF.eu please continue your Viatamin D3 supplements, this is per David Noakes at GcMAF.eu My issue is pain, I was wondering were you get your nexavir and what is it and who makes it? Does it help with pain? My ME CFS Doctor increased my famcyclovir to 2 500 mg tablets a day to four which could be helping to keep the EBV & CMV nasties in check. Best to you Sushi. Great news on your lower titers! Congrats!
 

Xandoff

Michael
Messages
302
Location
Northern Vermont
Hey Daffodil, prob a stuipid question but have you tried monolaurin? Something is finally working after my three month relapse...pretty much bedridden except bathroom and sink for water three months. I had my first five month good spell after monolaurin and juicing four months...of course I felt better and stopped. BOOM. Not so sure it is only monolauren...I take a TON of other supplements and start GcMAF monday. Just wondered if you tried it. Kinda depressed myself...I really think I must prepare for a life of fear at relapse. It scares me to death to think of going trhough this again. Not so sure I can live through too many more of these. I feel you Daff, I really do...and you have been at this so much longer. I do not know how you do it.

Shoesies, I am so glad to hear you are starting GcMAF. It is very benign to the body., I have had no side effects. Remember it is a natural substance that your body was once loaded with when you were young. It took me awhile to get comfortable doing my own injections especcially with wicked brain fog. My Nagalase levels went down immeadiately from 1.9 to 1.1 after only six months. I just took my 33rd injection today. Hopefully 2013 will be better for all of us.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hi Sushi,

I just took my 33rd GcMAF injection from GcMAF.eu and it does seem to be working. Again for anybody taking GcMAF from GcMAF.eu please continue your Viatamin D3 supplements, this is per David Noakes at GcMAF.eu My issue is pain, I was wondering were you get your nexavir and what is it and who makes it? Does it help with pain? My ME CFS Doctor increased my famcyclovir to 2 500 mg tablets a day to four which could be helping to keep the EBV & CMV nasties in check. Best to you Sushi. Great news on your lower titers! Congrats!

Hi Xandoff,

I don't know about Nexavir and pain. If you google kutapressin/nexavir (they are the same) you will find a lot of patient experiences. It is an extract of porcine liver and many patients find it helps--but it takes many months to feel the results.

I get it from Johnson Compounding Pharmacy in Mass--I think they do most of the US distribution and will bill your insurance. It is made by Nexco.

Best wishes,
Sushi
 

suzanne

Senior Member
Messages
178
Just about the D 3 supplementation. I know this has been debated around and around.

My dr has specifically instructed me not to take D3 and to avoid food and sunlight that boost D3: reason being: I have high 1,25-D reading and plenty of inflammation. D3 will make this worse- as I have experienced many times over when I tried to supplement!

Just another piece in a complex puzzle. I realise that others may not have the high 1,25 D reading.
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
Hi Sushi,

I just took my 33rd GcMAF injection from GcMAF.eu and it does seem to be working. Again for anybody taking GcMAF from GcMAF.eu please continue your Viatamin D3 supplements, this is per David Noakes at GcMAF.eu My issue is pain, I was wondering were you get your nexavir and what is it and who makes it? Does it help with pain? My ME CFS Doctor increased my famcyclovir to 2 500 mg tablets a day to four which could be helping to keep the EBV & CMV nasties in check. Best to you Sushi. Great news on your lower titers! Congrats!

Xandoff- Just a note- Cheney does not recommend any Vit D with GcMAF-as they are synergistic.
I know you have your own Dr. Just got his e-mail on this last week. Who is your Physician??

The best to you.

San Diego
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
Hi all! Back from my visit to Bradstreet. Had my first GcMAF treatment. I asked how many nanograms were in the shot and the nurse could not tell me. She said she only knew to measure by ml. I had a 1ml shot today and I have four more in this round of tx. Started at 1ml, next week 3ml, the following, 4ml and lastly 5ml. Sushi I will try and get with Dr. Bradstreet when we skype about test results to find out what nongram dosage he is giving. He does indicate in his paperwork that we are free to buy the GcMAF and inject ourselves, he would just prefer to follow is and give dosage assistance. Still unclear what that means in terms of dilution and dosage. I am beat from the trip. Bed for me. See ya'll tom maybe. Thanks for the help and good wishes. You do not know how helpful that has been.

Shoesies- What did Dr. Brad do on your first visit? Did you feel he was up on treatments, when are you to do follow-up??? Were you already on GcMAF when you went there???

Hope for your improvement

San Diego
 

SanDiego#1

SanDiego#1
Messages
280
Location
SouthEast USA
Then you took 60 ngs--that is quite a big dose. I can't manage more than 25 ngs. A few seem to be able to handle 50 ngs or more, but many can't.

You can also divide the GcMAF by taking the plunger out of a new insulin syringe (being careful not to contaminate it by setting it down) and squirt the extra GcMAF into the new syringe--then freeze it. I have done this sometimes if I have already divided my vial into syringes and later decide I need to lower my dose.

Best wishes,
Sushi
Sushi- I would really question pulling out the syringes and freezing the med!!!! This could be dangerous.

San Diego
 

Symptomatic

Senior Member
Messages
197
Just about the D 3 supplementation. I know this has been debated around and around.

My dr has specifically instructed me not to take D3 and to avoid food and sunlight that boost D3: reason being: I have high 1,25-D reading and plenty of inflammation. D3 will make this worse- as I have experienced many times over when I tried to supplement!

Just another piece in a complex puzzle. I realise that others may not have the high 1,25 D reading.

As you know, I'm in the same boat as you with the high 1,25D. If/when I move from Homeo-KMAF to GcMAF, I have no intention of taking any Vit D supplements!

I'm wondering if this thinking (to supplement with Vit D) is partly because most doctors don't test 1,25D and assume that "low" 25D also means low 1,25D...???